XMRV: the Urgency of Money

January 14, 2010

Posted by Cort Johnson

In a recent article on RJC.com Dr. Mikovits came out swinging. Fights between researchers can get nasty but its probably rare that they veer into this kind of territory. After suggesting that the Imperial College group purposefully tried not to find the virus (!) Dr. Mikovits referred to the fact that the paper was paid for, remarked on the quick submission time and finally suggested that the insurance companies were behind all this.

Is she paranoid or are they really out to get her and the WPI and anyone else who purposes an organic cause to this illness?

One can only speculate but one thing is clear – money matters in Science – it matters a great deal. Medical research only thrives when its hooked up to a money spigot and retroviral research needs one of the biggest spigots of all. It may be that Dr. Mikovits looked at the string of circumstances – the very quick review process, a physician reportedly associated with insurance companies, a rather basic study – and possibly divined an effort to slow down the process down just as it got started.

Medical research is a very competitive field and all it takes to kill a research arena is a lack of confidence. Time isn’t just money for a researcher, its also their career; pick the wrong project – spend a few years studying the wrong subject – and watch your peers fly by you. Given that virtually nobody thinks chronic fatigue syndrome is a good career bet anyway its probably not unrealistic to wonder if some labs wouldn’t quickly pull out if things turned a little sour. Research projects don’t necessarily die because they’re wrong, they die because they run out of money. Given that the short leash CFS always appears to be on one wonders if we just lost some partners? It doesn’t help that much of the XMRV research appears to be getting done using discretionary funds.

The presence of XMRV in the blood appears to make it impossible that XMRV will not get a full overview from the federal research community – but what about its connection to CFS? The DHHS studies – with both Dr. Vernon and Dr. Mikovits on board – appear to give us a good shot of really getting to the bottom of XMRV, and, of course, only time will tell.

What if the next study turns out negative as well? And the next one? My guess as a laymen is that the WPI did enough with the first Science study to keep the researchers digging away for awhile. But if there’s an unexpected twist to the XMRV situation – as there very well may be – will the research community will hang on long enough to figure it out. The danger is that they won’t, leaving us similar to where we were 17 years ago when the resources ran out on Dr. DeFreitas hammered but not quite dead retroviral effort.

This is why we all need to be vigilant. This time we have representatives – Dr. Mikovits and Dr. Vernon – embedded in the process. If they sense the effort is not getting the governments full efforts we need to support them and push the feds hard for more research. After all is said and done there should be no lingering basic questions about XMRV. It’s not always easy to tie research efforts into a neat bow but we should at least be able to say what exactly the WPI found, what kinds of patients it is found in and what roles it might play in CFS. We should be able to say, this time, that this pathogen got the study it needed.

While I’d be hesitant to call it a conspiracy, the work from the Imperial College is indeed poor and thus odd. I mean, the WPI went out on a limb to detect XMRV and prove that it is infectious whereas the Imperial College group childishly trumped “I found nothing!”, blissfully ignoring the obvious suggestion of “Well, then you have to look a bit harder.”

But unfortunately, there are political incentives to downplay XMRV, for example, the blood supply is contaminated. The longer authorities “don’t know” about that, the better for them; otherwise they’re in for nasty questions from the public.

This is just a mess. I would like to say that I think the WPI needs to focus on being the pedigree, and let the patients focus on being the attack dog. However the patients are the very ones who aren’t able to mobilize due to their disability. So what do you do? No matter how hard it seems, I think the WPI should just focus on advancing their case and leave the rest to deal with itself. Even several decades after the discovery of HIV there are still people who don’t think it causes AIDS so you’re obviously not going to reach everyone.

Patients really don’t need the WPI to come across as a bunch of kooks however, no matter how sound their science is, and the WPI might benefit from reconsidering who/how they communicate with the press. For instance Lenita Powers, the journalist at the RGJ who wrote this article, has been covering the WPI for a while now, and it kind of sounds like Dr. Mikovits was just venting to someone she considers a friend. It’s kind of hard to hold back when someone like Wessely is involved, but accusations of misconduct are a little much- what is the saying, never suspect malice when simple incompetance will do? They definitely need to leave the libel to the patients. I think the WPI might also have been reading what some idiots on the ‘net who have no idea what they’re talking about have been saying and letting it get to them. People will say what people will say and the only thing you can do is advance your case. The elephant keeps walking, and the dogs keep barking.

I think what a lot of this centers on though, is the potential XMRV connection with Dr. Peterson’s lymphoma patients. With XMRV known to cause neurological disease and cancer in mammals, thereby making it a prime suspect for the CFS/cancer connection, Annette Whittemore is literally fighting for her daughter’s life, and that’s why the WPI is going so hard at this.

So combine the above with a monumental international government, medical, institutional and educational disinterest and dismissal of CFS patients for the past several decades, and I guess the WPI feels like it’s them against the world. Maybe they could hook up with the CFIDS Association’s research network or the New Jersey NEI center if it opens or something? Not to mention Nancy Klimas definitely needs her own Institute as well, that would be a good collaboration. Problem is it’s just an ‘if only’ at this point.

I agree with John, aggressive talk doesn’t help the ME/CFS community, on the contrary. Generally, politeness wins out – even if your opponents are low, never sink to their level.

We would all benefit, scientists and patients alike, if WPI and other CFS researchers would focus on good science, and then let the results do the talking. I had (still have) such big hopes for WPI, I must say I’m a little disappointed right now.

I agree John. My experience with Dr. Mikovits is that she’s quite talkative and it may be that she was engaging in conjecture with just the wrong person. Things like that can’t help. If you say something that casts some doubt on your credibility I suppose its possible that that next grant might just have a harder time getting funded. Fair or not researchers are held to a much higher standard of objectivity than the rest of us.

It was not by chance that King’s college was the first to jump in with results, valid or not. That so rapidly published study made it clear to me that they had to get their oar in the water very quickly to show how close they are to the cutting edge. Not to show if the method could be replicated or if the retrovirus exists in the UK.

Dr Mikovitz reply struck me as prompt, strong and clear.

The initial study had a lot of control built into it, with samples being done at two different labs, yielding the same results. For me, the second credible study will meet the same standards as the first one. We have not seen that second credible study yet.

This was a very good post, Cort. You have a good way of stepping back to look at the larger picture, try to see all that is in it.

I agree that Dr. M is a talker–the autism thing and Mrs. Whittemore’s quick damage control show that. But I don’t agree with Mirja. I think we’ve tried polite for a very long time, and it hasn’t gotten us anywhere.

And, while “they started it,” isn’t a good rationale for anything, the Imperial College people certainly were not at their professional bests, here, either, and so the rhetoric began at a pretty high key. Nor do I blame an actual scientist who has taken up this cause for having utter contempt for Wessley and his ilk.

Am I missing something? When I watched Dr. Peterson give his presentation on XMRV, he showed electron microscopic images of the actual virus. So how on
earth could King’s College or any credible research facility ‘not’ find XMRV in at
least some people? THis is not to say that XMRV causes CFS or cancer (maybe it does) but XMRV should be found in at least some people unless the thinking is that
the EM photos were fabricated. Anyone with basic knowledge of statistics 101 should realize that ‘not’ finding XMRV in either patients or controls is the real poor
science.

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